Travelling and going on holiday

Going on holiday can be enjoyable for people with dementia and their loved ones as it can offer new experiences and a break from routine. Some people like to travel alone, although this can become more difficult as dementia progresses. Others prefer to travel with a companion – often the person who normally cares for them. This factsheet gives tips and advice about planning a holiday for people affected by dementia, including arranging travel insurance. It also gives an overview of the various transport options available and potential sources of financial assistance to help with taking a holiday.

Planning your holiday

Going on holiday should be a relaxing and enjoyable experience. However, it is important to plan carefully in order to avoid potential problems. People with dementia might find a new environment confusing or may have difficulties readjusting once they return home. Meanwhile, a travel companion might be so concerned about giving the person with dementia a good holiday that they themselves forget to relax. For these reasons, it is important to make plans for the most suitable holiday for everyone involved.

If you are organising a holiday for someone with dementia, try to be open with others (for example, hotel staff) about the person's needs. Explain potential difficulties or limitations so that everyone knows what to expect. Trying to hide problems can make life more stressful for everyone.

What type of holiday to take

People enjoy various types of breaks, depending on their interests, personal preferences, availability and finances. The extent to which the person's dementia affects their daily life will also determine the type of holiday that is most suitable.

Staying with friends and relatives – If you are considering visiting friends or relatives, or if a number of you are going away together, discuss the situation and suggest how each person might be able to help. For example, some members of the group might spend some regular time with the person with dementia during the mornings or afternoons. This can give the person and their usual carer a break from each other. Alternatively, they might provide extra help with particular tasks, such as preparing dinner. People are usually more willing to offer support or share responsibilities once they are clear about how they can contribute.

Independent travel – This option offers the greatest choice and flexibility. It may be suitable for some people with dementia, but you will be responsible for arranging your own travel and accommodation. Speak to the hotel or B&B before you book to check that it is the right place for you. Try to look for places that offer a friendly, welcoming atmosphere and where staff will be understanding if any difficulties occur. A smaller hotel without too many corridors may be less confusing. It may be a good idea to book out of season, when everyone will be less rushed and can give you more time and attention. The charity Tourism for All provides a range of information about accessible places to stay (see 'Other useful organisations', below).

A mainstream package holiday – You may want to go on a mainstream holiday where everything is arranged on your behalf. If you choose this option, talk to the travel agency and holiday company before you book. Make sure that they are aware of your needs, and that these needs will be able to be met.

Specialist provision – A range of holiday and travel services are available for people needing special support. A person with dementia may be accompanied by a friend, relative or carer, or may use respite services (see factsheet 462, Respite care), to give themselves and their carer a break from each other. Vitalise provides specialist holidays for people with disabilities and their carers, with centres across the UK. It also offers breaks at five purpose-built centres in the UK for people with dementia and their carers. If a carer feels they need to take a break on their own, the person with dementia could go on holiday separately. This could be arranged through a company offering specialist support. Alternatively, the person with dementia could stay at a respite service.

Whatever type of holiday you choose, try to find out as much as you can beforehand about the place you intend to visit. Are there interesting places to see, activities you can enjoy and pleasant places to relax? If anyone travelling has a physical disability, will it be easy for you to get around? Local tourist offices can provide useful information.

Be aware that someone with dementia who is independent in familiar surroundings may need extra support when coping with a new environment or changes to their routine. Even if they are travelling with a companion, the holiday may be more enjoyable for everyone if another friend or relative goes too.

Knowing your rights

Since 1995, under the Disability Discrimination Act (DDA) UK businesses have been required to make 'reasonable adjustments' to make sure their services are accessible to disabled people. But in October 2004 a landmark change took place, when Part 3 of the Act came into play. This legislation requires service providers in the UK (including, for example, travel agents, train companies and hotels) to remove any physical barriers that prevent disabled people from accessing their services, where reasonable – for example, removing steps from entrances. They are also required not to treat a disabled person less favourably. So if you ask for a room with an accessible shower, for example, they can't charge you more.

The DDA does not just cover physical access. The DDA definition of a disabled person is anyone with 'a physical or mental impairment which has a substantial and long-term adverse effect on his ability to carry out normal day-to-day activities.' This includes people with mental health conditions and learning disabilities, and many people with dementia would fall into this category. The duty to ensure that a person can access a service may range from providing wheelchair ramps, to helping someone get off a train at the correct station and waiting with them until their family or friends arrive.

The DDA is a UK law, so it only affects services within the UK. Air transport is not covered under the DDA. However, a European directive places responsibilities on airport managers, airlines, tour operators, ground handlers and travel agents to be trained in disability awareness and disability equality. This directive is called Access to air travel for disabled persons and persons with reduced mobility. Vessels such as cruise ships are not covered if they travel more than 12 miles from UK coasts.

On the whole, travel companies are aware of the needs of their passengers with disabilities. Whatever kind of break you are taking, whether or not it is covered by the DDA, contact all the companies involved first. Make a list of your requirements and ask how they can help you.

Preparing and packing

The earlier you start preparing for your holiday, the less stressful it will be. Allow plenty of time to organise passports, insurance and other administration. It can be helpful to write a list of all the belongings that you are taking with you. This list should state what is in each piece of luggage and how many pieces of luggage there are. Each person travelling should carry one copy of the list with them, and another copy can also be left with someone at home.

Make sure all luggage is clearly labelled with your name and address. Also, put a sheet of paper with your name and address on it inside each separate bag or suitcase, in case luggage labels are removed or lost.

Passport and other identification documents

Anyone travelling outside the UK needs a current passport. Even for flights within the UK, most airlines require a valid passport, or another identity document that includes a photograph.

Check the passport expiry dates of everyone travelling several months in advance. For travel to some countries, your passport must have several months' validity remaining, so it is important to check the requirement for the country you plan to visit.

It is a good idea to make two photocopies of the personal details page of your passport. Leave one copy at home with a relative or a friend and carry the other copy with you (separate from the passport itself). Also make copies of your important documents. Write down the phone numbers of places to call if documents or bank cards get lost.

A MedicAlert bracelet or similar identification may be useful for a person with dementia in case they become separated from the person they are travelling with, become confused or experience communication problems. For more information call MedicAlert on 01908 951045.

Medicines

If you are likely to be separated from your luggage during your journey, keep medication in a carry-on bag, together with a list of the medicines and dosage routines. This can be helpful if travelling on an aeroplane or coach. Medication must be kept with you at all times. If any medication needs to be kept refrigerated, tell the airline in advance and make sure you will have access to a fridge where you are staying.

Travel insurance

Ensure that you are protected in case of eventualities such as sickness or lost items. You will need a travel insurance policy that covers all passengers for any relevant medical conditions. Some policies do not cover claims arising from a 'pre-existing medical condition or defect', which could mean that any illness or accident linked to dementia may not be covered. Policies that do not have this clause sometimes have higher premiums, so it might be necessary to shop around. There are specialist insurers that cater for people with special needs. You might also consider making sure you are covered for travel delay.

The European Health Insurance Card

It is important that you have the correct medical documents that entitle you to health care abroad. Inside the European Economic Area (EEA), free or reduced-cost emergency treatment is available to UK patients with a European Health Insurance Card (EHIC). The EEA consists of the 27 member states of the European Union, plus Iceland, Liechtenstein and Norway. Switzerland is also covered, with some exceptions. This card replaces the E111 form. Applying for the card directly from the NHS is free and it is valid for up to five years. For more information call the EHIC line on 0845 606 2030.

There are a number of circumstances in which the EHIC does not cover medical treatment, so check through the terms and conditions carefully before travelling. Remember also that the card is not an alternative to travel insurance – you will still need insurance to cover eventualities such as repatriation.

Treatment in countries outside the EEA

Even if you are travelling to a country not covered by the EHIC, you may be entitled to some health care. The UK has reciprocal healthcare agreements with certain countries outside the EEA for the provision of urgently needed medical treatment either at reduced cost or, in some cases, free. The range of medical services may be more restricted than under the NHS, and if charges are involved, these cannot be refunded by the British government. Either way, you need to carry sufficient insurance to cover them.

To obtain treatment, you will normally have to produce your passport or some proof of UK residence, such as a driving licence or medical card. Requirements vary from country to country. For more details, visit www.nhs.uk/nhsengland/healthcareabroad.

The journey

Airports, railway stations, bus stations, ships, trains and even large aeroplanes are usually busy and confusing places and it can be very easy to get lost or to lose touch with someone. If you are travelling with someone with dementia, always make a mental note of what they are wearing and consider carrying a recent photograph of them. If you need help, look for people who are wearing official uniforms (for example, security staff, airline counter staff or train conductors).

Consider travelling at quieter times if possible, avoiding weekends at the height of summer.

Travelling by air

Airlines generally state that people who travel with a 'permanent or stable condition' do not require medical clearance. However, it is best to check at the time of booking what, if any, medical information is required.

Some airlines may not let someone with dementia fly alone if there is a possibility that they may become distressed while in the air. Airline cabin staff do not offer special assistance with medical needs, eating or visiting the toilet, and airlines will insist that a person with these needs has an escort for the flight. Some airlines can provide an escort for a person travelling alone, although the person travelling has to pay for the escort's fare.

British Airways advises people with a condition that may affect their ability to fly to contact its Passenger Medical Clearance Unit, which offers a free advisory service to doctors, other healthcare professionals and passengers. (See 'Other useful organisations'.) Airports and airlines should provide the following assistance to anyone with a sensory, physical or learning disability:

assistance to reach check-in

a briefing on emergency procedures and the layout of the cabin for those who are travelling

help with getting on and off the plane

help with stowing and retrieving baggage on the plane

an on-board wheelchair (not always available)

someone to meet you off the plane and help you find your way around the airport.

To help you access the support you need, you may need to complete a form called an incapacitated passengers handling advice (INCAD) form and/or a medical information form (MEDIF), which must be filled in by your GP. These are available from travel agents and airlines. They last for only one journey, but some airlines provide frequent travellers with a Frequent Traveller Medical Card (FREMEC).

Many airlines can escort people from the car park, train station or taxi stand if this is requested in plenty of time. Compare the arrangements offered by different airlines before booking, and check whether the cost of any special assistance is included in the price of your ticket.

If the airline cannot offer assistance, the airport may be able to. Many airports publish information about facilities at the airport, including information for people with special needs. If you use a wheelchair, check the policy of your airline as you may be expected to transfer to an airline wheelchair at check-in. If your flight is cancelled, ask the airline to make special arrangements for you if you need to rest. (This is a good reason to tell the airline of any medical conditions prior to travelling.)

Pack a small travel bag of essentials in your carry-on bag, in case your flight is delayed or your luggage is delayed on arrival. Take the items you need to make you feel comfortable (change of underwear, nightwear, shirt, socks, basic cosmetics, toothbrush) and any medication that you might need.

Liquids, gels and aerosols are only allowed in individual containers of 100ml, and all containers must fit comfortably in one transparent, re-sealable bag no larger than 20cm x 20cm (for example, a freezer bag). This includes toiletries, cosmetics and toothpastes. The only exceptions are essential medicines. Pack any other items in your hold luggage.

Travelling by train

Rail companies can arrange to meet a person at the departure station and escort them onto the appropriate train, if they are informed at least two days in advance. They will also take a person to their connecting train, if necessary. This support can be booked through the national Assisted Passenger Reservation Service. To arrange assistance, phone National Rail Enquiries on 0845 7484 950 and ask for the phone number of the rail company you are travelling with.

Eurostar provides a complementary assistance service for passengers with special needs, and assistance can be provided at any Eurostar terminal. This service can be arranged when you book, as long as it is at least 48 hours before the journey. For more information call Eurostar on 08432 186 196.

Always confirm any arrangements the day before setting off and make sure you have also arranged assistance for the return journey.

Travelling by coach or bus

Although passengers are responsible for seeing their luggage on and off the coach, the driver should assist with actually putting the baggage into the storage area under the coach. Keep all valuables, tickets and medication with you on board.

Many individual coach companies run their own services for travellers with special needs – for example National Express has an Assisted Travel Team. See 'Other useful organisations'.

There are also a number of specialist companies that offer UK and European coach travel with fully accessible vehicles, for those who use a wheelchair. For more information, contact Tourism for All (see 'Other useful organisations').

Travelling by sea

Vessels that travel more than 12 miles from the UK coastline are not covered by the DDA, so may be less accessible than ferries travelling from the mainland to the Isle of Wight, for example. Check with the ferry or cruise ship operator to see if they require someone with dementia to have a companion or escort, or medical clearance for the journey. Tell them what assistance you will need at the time that you book the ticket. Some UK-based ferry companies offer discounted fares for disabled people. However, you may need to apply in advance to obtain a discount.

Travelling by car

If you are planning a long car journey, try not to travel for more than around two hours before having a break. Consider using a taxi service or asking a relative or friend to drive. Try to ensure that everyone is comfortable and that seatbelts are properly fitted. If you are planning to stop at motorway service areas, be aware that these can be vast and sprawling complexes and it is easy to get lost or disorientated, or separated from travelling companions. It might help for people with memory problems to keep on them a record of the model, colour and registration number of the car (a clear photograph would be ideal).

Plan your journey carefully, factoring in regular breaks from driving, and listen to traffic updates before you set off.

Arrival

A person with dementia may feel tired or unsettled on arrival. It may help to have a cup of tea, relax and leave the unpacking until later.

Ask for a mattress protector and extra sheets to be left in the bedroom in case of accidents; then you won't need to ask for them in the middle of the night.

Financial assistance

If you have dementia or are caring for someone with dementia, and you are having difficulty in meeting the cost of a much-needed holiday, you may be able to get financial assistance from a relevant charity.

Tourism for All publishes a guide to financial help towards the cost of a holiday or respite care, which gives details of various charities that may be able to help. There is a charge for these guides if you are not a member of Tourism for All.

If you would like to enquire about funding for respite care, contact your local social services department.

Vitalise

Vitalise is a national charity providing essential breaks for people with disabilities, visually impaired people and carers. Vitalise's centres provide 24-hour care on-call and personal support in a relaxed, holiday environment. They also run breaks for people with dementia.

Factsheet 474

Last reviewed: April 2013Next review due: April 2015

Reviewed by: Dr Marilyn Cash, Post Doctoral Researcher, School of Health and Social Care, Bournemouth University and Sallie Rutledge, Dementia Lead Nurse; Proprietor, The Mede Holiday Respite Support, East Devon